Mike Dunham from South Carolina

"We need someone in the system to act as a patient advocate and to coordinate."

Mike DunhamAs a teen in Montgomery County, Maryland, Mike Dunham worked in the family garage as an auto mechanic. After college, he served six years in the U.S. Marine Corps, three as an officer. Starting in the mid-1970s, he spent a quarter-century career in garages as an automotive service manager. Though doctors can’t be sure, they suspect chemicals in that workplace triggered the illness that changed Mike’s life forever: microscopic polyangiitis (MPA), in which his immune system turned on him, attacking and severely damaging his lungs and kidneys.

Now Dunham, 63, is physically disabled, vulnerable to every passing infection, and rarely ventures to the beaches near his South Carolina home. He has grown accustomed to repeat hospitalizations and shifting casts of practitioners — and his primary occupation has become managing his own health care.

In December 2006, Mike was experiencing extreme fatigue and difficulty breathing, then began coughing up blood. By the time wife Daphne got him to the local hospital, doctors found massive bleeding in Mike’s lungs and made the initial diagnosis of MPA. On a respirator and in an induced coma to slow down his heart, Mike was medevaced to the Medical University of South Carolina in Charleston.

"From what my wife tells me, when I arrived at MUSC, the first physician assigned to me told my family that there was no hope for me, and to gather the relatives with their dark clothes and say goodbye to Pop," Mike says now. "My wife immediately went to the administration and demanded that another physician be put on my case. That physician’s attitude was that I was a challenge and he would do everything medically possible to try to save me. I spent four weeks in the ICU in an induced coma. I underwent continuous dialysis because my kidneys failed, and complete plasma replacement and chemotherapy" to try to suppress his runaway immune system.

After a month of rehabilitation in his local hospital, Mike went home and continued treatment: two years of one sickening immune-suppressant drug followed by nine months of another. During those years, though largely housebound to avoid germs, he developed pneumonia and then flu, both requiring hospitalizations. Wretching during the flu so damaged his weakened throat muscles that his abilities to swallow and speak were impaired, which had to be corrected with an operation.

Finally, in November 2009, Mike’s MPA was declared to be in remission. What hasn’t let up, says Mike, are the waves of medications, lab tests, office visits and return hospitalizations. Mike says he has cordial relationships with all his medical practitioners. But even with help from them and from Daphne — who works for a health insurance company — "it has been a handful to set up a system to manage my care," Mike says.

He has an oncologist for chemotherapy, a pneumonologist for lung care, a renalogist for kidney care, and an internist chosen because she’s an admitting doctor at what Mike wryly calls "my favorite hospital." Every 90 days when he sees the three specialists, he asks for the appointments in a block, and asks each doctor’s nurse to send his medical records to all his other doctors. Every 90 days he goes through full lab work-ups ordered by two specialists, and reminds the lab to send every test result not only to the requesting physician but to the others. When he makes all these requests, he says, his practitioners "do it willingly and with a smile — but you have to ask."

"I keep a full, current list of my meds on me at all times, and my doctors get an updated copy whenever I visit," Mike says. "I have watched that data and other notes being entered into a laptop as I consult with my nurses and physicians. There are lots of health care providers who are very reticent about electronic records, but I think that’s one of the best improvements we’ll see in medical care, when everyone goes electronic.

"The last time I was in the hospital for pneumonia, in November 2010, everything from the admission process to the hospital floor was done on a computer, and there were no mistakes. But one or two hospitalizations back, a nurse came in to give me medications and through some error in instructions on paper, her notes tell her she’s supposed to give me 30mg of prednisone three times a day. Wrong! Because prednisone is one of the medications I take daily, I know it’s 10mg three times a day for a total of 30mg in a day, not 90mg! I told her, 'No way! You just note down that the patient refused medication, until you get this straightened out.' If I were very ill, or mentally challenged or a dementia patient, I could not have addressed that.

"And that’s the scary part," Mike concludes. "We need someone in the system to act as a patient advocate and to coordinate. I was born in 1948 so I am pretty much a first-wave baby boomer. But in the next few years, lots more elderly folks will start to swamp the system. Then we as a country are going to be dealing with something awful in terms of the number of people facing these issues."